How leader of DeVos Children's Hospital cancer program learned he had a brain tumor

GRAND RAPIDS, MI -- The discovery of Dr. James Fahner's brain tumor was one of those cosmic accidents that almost didn't happen.

The founder of the Cancer and Hematology program at Helen DeVos Children's Hospital, Fahner is still its chief guide, and he charges through life taking care of the needs of children with cancer and blood diseases. He also founded a pediatric hospice program to serve children in West Michigan.

Knowing that those of us who come through such a diagnosis and treatment can give hope to those coming behind us and to those who walk with us, Fahner and his wife, Gail, agreed to talk about their experience.

Although something of an open secret among Fahner's friends and colleagues, this is the first time he has talked so publicly about having had a brain tumor and how it has affected him as a doctor and a man.

After extensive surgery to remove it, the tumor would prove to be benign: Fahner did not have cancer. Still, the surgery was far from the end of the road through what Fahner calls "the valley."

Discovering the threat within

In 2008, when he was having vocal strength problems, he headed for ear, nose and throat specialist Dr. John Kosta. Kosta ordered a complete set of scans. To get a complete view of the neck and vocal chords, the scans also caught the lower right portion of the brain.

They revealed a large golfball/small tennis ball-size growth in the lower right portion of the brain.

"If it had been higher, they'd never have seen it," Fahner said. "Sometimes we are led in directions we're supposed to go."

Unlike most of us, who go into our diagnosis knowing too little, Fahner, a physician for almost 30 years, went in perhaps knowing too much.

Following an MRI, Fahner recalls sitting next to the radiologist, looking at the scans with the image of his skull and the tumor.

He calls it an "out-of-body experience. I kept looking at the image and back to my name on top of the scan, back to the image, and up to my name.

"Time stands still, and everything wraps around the unreality of what you see on the screen."

Gail Fahner later recalled an emotionally charged call from her weeping husband, telling her about the tumor.

Why a phone call, rather than a face-to-face?

Fahner paused and finally said, "I needed immediate support and also it seemed that if I said it out loud, it would make it more real. I couldn't get through it without my partner, hearing her voice, right then. I was having a meltdown.

"Gail and I went for a walk that night, and I felt nothing different than I had eight hours ago, but now I was carrying the crushing burden of the knowledge that I had a tumor ..."

"After the MRI is where my story departs from so many others: I had the luxury of having a type of tumor and location" that lent itself to surgery.

He explained he was diagnosed with a tumor called a meningioma. Although brain tumors are not rare, according to the National Cancer Institute, and meningiomas are the most common benign primary tumor, only after surgery would Fahner know whether the one in his head was benign or malignant.

While being a patient who is a doctor can be a case of TMI (too much information), it does have the advantage of allowing you to choose your physicians based on long professional experience.

For what Fahner described as "major, major surgery" he chose Dr. Stanley Skarli as his neurosurgeon. Although Skarli sees both adults and children, "people know him as a pediatric surgeon, and they would ask me how I got him.

"I lied about my age," he said, with his huge, trademark grin.

"I had the luxury of sitting next to him for years discussing cases, and I have seen his work and what he can do. I thought, 'If he can work miracles with tiny heads, why not do the same with a bigger head?'

Fahner's tumor lay near key blood vessels, and two weeks after diagnosis, he had surgery. Why so fast?

"It was like seeing a time bomb ticking under the table. ... I wanted to be on the other side" of what would be an 11- or 12-hour surgery. Removing the tumor would involve cutting out a piece of his skull to get at it, and the risk of clots and strokes was very real.

"There is something uniquely horrifying about having something in your brain," Fahner said. "Operating felt like having someone entering your soul. Pre-op, you worry about will I be the same person, my intellect, how will I be?"

Knowing how worried the Fahners were about what the biopsy of the tumor would show, the pathologist who analyzed it, excitedly came to his bedside after surgery to report it was benign: No cancer cells.

Gail remembered her husband thanking the doctor profusely, again and again, promptly forgetting her visit, and then anxiously asking Gail half an hour later: What did they find?

"You can tell me, I'm a doctor," she remembers him mumbling in his groggy post-op haze, and the two of them burst into gales of laughter, he putting his hand sheepishly over his eyes.

Gail Fahner's down-to-earth directness, strength and knowledge born of her own medical training would be more than equal to the task of caring for her husband of almost 28 years; a man who candidly describes himself as the "world's worst patient."

Although the initial surgery went well, it would prove to be far from the end of Dr. James Fahner's days as a patient. He like many others, would have to deal with infection, return hospital visits, more surgery, anger, depression and sleeplessness from mind- and mood-altering drugs ... and ultimately, a new way of moving through life.

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